Music and Film for ASD/OCD and life as Alice.

Michael Nyman is a successful modern composer, whose name you might not know but who did the score for the film The Piano (among dozen’s of others including the horror/Wendigo film Ravenous). With my OCD and ASD, I found his use of repetition with emerging themes soothing. I took his score for The Heart Asks the Pleasure First and would use the rooms at the music college or library to self teach myself the piano (I thought as I could read music, it couldn't be that difficult - the score requires different beats for each hand, just to start). Plus he alternates so that most to all the instruments have the themes, even though they might all be doing different beats. It is hard to understand a band where the pianist is playing 7/5 with one hand and 11/11 with the other while the viola is playing 16/11 and the violin is playing 9/8, etc. So here is one of the more interesting pieces to watch: Chasing Sheep is Best Left to Shepherds.


My favorite of Nyman's compositions is MGV, which you need to buy (available on Amazon, used in two collections), but is a musically account of a rail journey on a French line. Here is (after about 20 seconds), the scenery which the music is composed to give you the essence of combined with the real scenery (as the journey time and the music time is the same).

His films with Peter Greenaway were a combined effort as Greenaway filmed around his music. For me, Drowning by Numbers is on of the top films of my mind structure. First, a girl skips counting and naming the stars, to 100, “once you've counted 100, all the other hundreds are the same.”(this kind of statement which is both true and false is typical of Greenaway) The film is voiced by a boy who makes games with odd rules which only he and some sheep seem to play (like sheep tic tac toe). Meanwhile, in sequence, the numbers from 1 to 100 are see or spoken somewhere in the film, and the colours red and yellow are seen, and later the boy notices and starts sequencing these along with the days people die (Thursday is the highest). Zed and Two Naughts (ZOO) is another one about duality and the films tend toward the OCD mindset. I think the one film I haven’t seen (The Cook, The Thief, his wife and her Lover) is his most popular. You can watch The Daughtsman's Contract in entirety starting HERE (it opens with Castrati, and includes living topiary.

Personally I am in an odd place where I keep trying every day to get up and go with Linda to the Library. So far, I am on attempt seven without success. Sometimes health, sometimes Linda is away, sometimes there are other circumstances. I have also not had a 6 hours, nap and 6 hours up, so this week has been done in 4 hour to 7 hours awake a day, making it fly by. I find I am in another month. It tends to make me feel I have very little control of anything as no matter when I go to bed, or what I sacrifice to get up at 2:00 pm and see the sun, it never occurs. Indeed, my life seems to be mimicking Alice in Wonderland to a large extent right now.

I hope you are having more success than I.

Rock On!: Anarchy comes in unusual forms

Canadian anarchy, like that of George Woodcock, is not about destruction but about eliminating the entrenchment and abuse of power. In this absence, it is hoped, a better world will be founded.

Rock on this vid, after exercise, I used this to try to block the pain (well that and a pill about 130 times more powerful than morphine with significant street value). The video is based in Hawaii, Japan, and around the Northwest, with a Japanese theme. There is the anarchy of joy, of cats (nature's anarchists), of exuberance, (yes that is a monk standing in Japan), of smiling when no one expects it. I loaded the video so you can do HD, and full screen if you want.

This is Oysterband, a folk group I went down from Battleford Sk. (about iceland parallel) to Saskatoon in order to get their first CD. It had Leon Rosselson’s re-version (including some of the original 1640’s lyrics) of the Digger’s song. Leon is an anarchist as well and allowed use of his music and lyrics publishing on the anarchist label ‘FUSE!’, I follow his example here which is why photo’s and text are and can be used with minimal credit.

Regarding my post on choice and defiance, I honestly wish I could lead the kind of life which makes the true difference, spending 10 or 15 years working in the back, silently making changes. Linda and I used to do ‘Hard/Soft’ advocacy, where I would come in, and demand change, point out illegal actions, breaches of human rights and then Linda would come in with mild and moderate suggestions. They always ended up flocking to Linda to avoid what I called ‘The Mirror’. The problem is that bullies always pick someone, and if I don’t stay ‘No, not here’ or just ‘No.’ then someone else gets hurt. I welcome the idea of people acting on their convictions regardless of consequence, and still hope that if they see it, if they know it can be done, they will.

The worker who came was not physically able to carry any items (or even perhaps walk to the Y), so Linda came tonight. She said she saw the readings and tried to do the level of intensity in the workout. After, she told me that she could not, and that it was hard to believe that this is what I do, and harder, week after week. She helped me a lot when I was going into seizures and hallucinating while trying to sleep. ‘We do what is front of us.’ I guess I, as one teacher put it, ‘Hoe till the end of the row.’

Desperate Times: A degenerative disease will crush ‘routine’ as it pleases

Sorry this is so short. I have only had a few hours awake each day. I tried on Saturday to go to bed early, being awake just a few hours after sleeping 14 hours. I hoped to wake, to use a prepaid Groupon to go out for lunch, to see daylight, and go to the library. It was based on my routine. It ‘should’ have worked. (oh, those dread words, ho, ho, ho)

I forgot the most important thing: that in a degenerative disease, the ‘standard’ may be mentally what I WANT my life to be, but that baseline of living will ALWAYS end up out of my control, and degenerate at any given time.

That is what happened yesterday, as I ended up sleeping, in distress, for 22-23 hours. So, for the fourth day, I am awake only 6-7 hours.

BAD, BAD NEW: Two days ago, the power connection to the portable concentrator died. This is what I need to keep breathing. It died after warrantee. Linda and I have been trying to cobble the bits and keep them going. My computer for example, was repaired at Xmas as a gift from a computer shop. If I don’t get a cord very soon, I will have to use a 20 year old concentrator which has a cord which only allows me to move about in the apartment. And when that dies, and it will, in weeks or months, or when the weather improves enough so the heat makes it unuseable, then I will suffocate.

We asked the Canadian company for inogen, and they quote $350 for that connector. Linda thinks she has found one on Amazon that will make the connection and is $28 with free shipping. This is it: Universal Adapter/Power Supply/Charger

It is on the WISHLIST.

I am desperate, and if you know about connector cords for the Inogen One and this will do, let me know. Linda has checked and it has all the specs and 10 connectors for all types of devices. I need it badly and I need it order right away, so Cheryl can bring it over. I wish I didn’t have to beg. I am already so thankful to so many people for acts of kindness.

I survive because of acts of kindness.

I know kindness because of the kindness I see from the years of people who helped me live this long. And I am glad, though yes, I struggle to think clearly for hours, sometimes days as the pain, I hope you never, ever have to know any of this kind of pain. EVER. And I survive, through the bad parts to the good ones because of you, and Linda and people unnamed (Who I would name but I assume you want privacy).

Let me explain about the computer (which not only is my internet access, my blog, my world view, and the DVD center.

I have a choice, I can take 20 mg of Dilaudid in order to sleep for 8 hours. And then more along with the Fentenyl while I am awake. This produces constipation and, when I oversleep, like sleeping for 23 hours, it means I wake into the first several hours of detox. And even with pills, it takes about three hours or more to stabilize. So yes, going into drug withdrawl, the very thing they show on police shows is more effective than physical torture. And it happens several times a week.

OR: I can not use Dilaudid, and can simply sleep as I can, trying to make a routine out of it, and have a ‘six by six’ week and day (six hours awake, two asleep, then six awake before a 9 hour or so sleep). I need to also exercise 1 day, and from that day, I am in pain so much I cannot sleep, or function, and then crash the next day. Plus, three times a week, I use the pills, the flax, the prunes, the whole list of six to seven things I take daily, including 2 liters of water per wake period to ensure I have empty bowels. It took a couple months to get that stabilized. But it means that a) I have 2-4 days every seven when I am in intense pain, and if I take more than 1 or 2 ‘breakthrough’ I will end up constipated, and with detox. And b) I have, if all goes well (and oft it does not) a few days a week which are ‘six by six’ and I spend them with Linda. For the four days a week, the ONLY functional pain control I have is the visual and auditory input from DVD’s or reading. To write a blog means I hurt for the hours it takes to write and for the next day.

IF I can use the computer and DVD’s for pain control, it means I can exercise, I can leave here, I can DO things. If I take the high pain medication (extremely addictive, with detox shakes and pallor) then the next step is an IV in bed. It is game over.

I never thought I would see 2012. Some days it is 30 minutes at a time to see how I will survive. But I have the intestines under control (huzzah, a 14 month fight to get a regular schedule), but have lost the sleep pattern. I force myself to exercise, but I want to be able to leave here to do something OTHER than exercise. Besides the hair cut, that has not happened for several weeks.

The higher the pain, the more I need the intensity of my frontal lobe and an enthralling show. I can’t wait 10 minutes for a character to develop when I can hardly sit still three seconds. I am watching some of the UK TV shows. The new Sherlock Holmes season 2 is coming out soon, and I am selling off about 20 region 2 and 3 DVD’s to help pay for that (if I can be awake long enough – that didn’t happen this week). Some titles, like Miranda season 1-2, there is no international seller, so I would need someone I could send the title to who would send it on to me. If you want to be that person, please let me know. If you want to give Amazon.co.uk gift certificates, you just click HERE.

I wish I was in the US, with the netflix and the streaming but Canada has FEW titles that do that, and they are rather dull. I even tried to rig a ping to watch HULU but no go. I try all angles, but right now, finding a pain control, and using it, one that doesn't have immediate detox and addiction (though some series are addictive) is all I can try. I have trolled the library and have 50+ titles on hold (anyone in Victoria, put 'The Eleventh Hour' on DVD on hold - it is a pay to print to disc by WB of a Jerry Bruckheimer TV show that the library has for some reason, with only 1 or 2 people on hold - 3 episodes per disc, don't need them in order - they helped me for 3 or 4 days).

Please understand that I am, for several hours, almost insane or insane with pain. I have to scream a little, I cannot recognize people, I simply hang on. I hold on for those days when it is not like this. I don't know what people with cancer do for the pain, or how they try to keep a toe or hand in the outside world. I NEED to exercise or I will die, very rapidly. So I hold on, thanks to you. I want to survive, I just need to hang on, and also somehow do nice things, postcards, more gifts, after I have the sale. I don’t know if any of that made sense, but I have, at the computer, by the toilet (Where I spend WAY too many hours keeping ‘regular’), by the DVD’s, there are postcards and letters to remind me that people helped me, that people have been there, are there, that I am not alone, and that I MUST hang on so that I can make sure they know they are not alone either.

For those 2-3 days a week that are ‘middle days’, with books and what I have I hold on as best as I can and write, even when it seems to not make that much sense. For me, something like Game of Thrones (Amazon wishlist) or the upcoming Amazon.co.uk US series like Chicago Hope or Franklin and Bash (canadian series), Eternal Law (uk) or The Practice 1 and 2 are the beacon in the wasteland between here and April.

It has been a sucky week. Suffocation is not a fun future. The pain has come too high, I have to go.

The price of holding on: defiance

I don’t pray for a miracle, but sometimes I pray to die. I never wake except to pain. The limit of my waking is based on how much I can endure, and using the one eye and balance hard won in the gym and nights too painful to sleep, I ignore the bomb in my chest and get from the wheelchair to the toilet.

Do you remember running those sprints in high school? We kept going until everyone had thrown up. The feeling you had when you staggered, in oxygen debt but as fast as you can to ensure you are not last….that is what my heart feels, every beat, hours a day. I clamp down, and just carry on.
Maybe if dying felt good I would let go.

But Death is a bully.

I don’t give in to bullies.

Beat me, suffocate me, hurt till I scream, and I do scream. I wimper, I mewl. Watch the Danse Macabre, when it hurts so bad I can’t help but writhe. I will get up. A new plan, a new attack, a new way forward. I know, as each day I lose, sometimes a little, sometimes too much to say aloud. Why has this disease eaten up our years? I know that I will never win.

Choices made when strong show us at our best, but when it is a person stripped, physically, emotionally and psychologically, that decisions matters. I vow, in all states of body and mind, to choose the best Elizabeth. I will never cede, I will still see it as a choice.

I choose to live today. This is my forever.
Besides, I don’t give in to bullies.

“Shall I tell you what the real evil is? To cringe to the things that are called evils, to surrender to them our freedom, in defiance of which we ought to face any suffering.”
-Seneca

Always a Digger myself, early anarchists, the Diggers of 1649. (click on play to hear the original round song.

'Riding the Toboggan', Anime Hair and polygamy sex

Fresh powder snow for a week in Victoria. It was snow that was sticky to the point that wheeling was like creating a giant snowball on wheels, perfect for snowman weather. The colder temperatures outside meant I had moderate to severe frostbite indoors, fighting it with heaters, gloves, and watching fingers turning funny colours.

The Coho is in Dry Dock for 12 days or so as the annual fixing of the 50+ year old ferry occurs. Cheryl got a vacation day off to come over so the three of us were able to spend some time having FUN together. We watched an episode of Bones with polygamy of sisters. As one said, ‘We sisters are FAMILY, to be a sister IS to be a wife.’ I looked to Linda and said, ‘Uh, you know how Cheryl is my ‘sister’…”

Linda, “….yes?”

Beth, “But not like...sister/wife, um, having sex...just so you know.”

Linda laughed but said nothing. She can be confusingly random in communication at times.

We watched women’s tennis. We talked. We did a jigsaw puzzle from Hunt, another of the 1/4 inch wood, soy paint for better colour, personally designed Artifact Puzzles. They are large enough to have fun by myself or with friends, and yet small enough that I don’t end up in agony doing them. Plus this puzzle had ‘fantasy’ pieces, like the dragon, Pegasus, and cat.
I was able to have this remission because of exercise on Thursday, which caused some slight pain (no sleep for a night, two nights of hallucinations, and a two series of seizure cycles of partial and clonic tonic (grand mal) seizures which occurred after falling into a light sleep state. This lasted for over an hour and was like being stuck in a clothes washer on spin cycle (eventually the hallucinations mean I find out tomorrow how long I kept going into seizures while asleep). I have been ill for the last weeks/months so that even with only one appointment a week, it was often too much for me, and I would miss it. That's being alive, but sucky. And I didn't want to dump all that on you, so I wrote about what I could, which was often the good films or books that kept me sane for hours at a time.

Thanks to ‘riding the toboggan’, I was able to have a respite of 36-48 hours. I had been constipated, taking everything I could for it with little luck. But after the hours of exercise, a series of cramps started and continued for hours which emptied my intestines completely. That cramping, I call ‘riding the toboggan’ because a toboggan is a piece of wood, plastic or steel where there is a curl and once headed downhill, steering seems to occur by how vigorous you are in screaming.I still end up soaring off of snow bumps and riding over bushes or into trees, but the screaming makes me FEEL like I have control. Either way, once started, all keeps going until it is done!

The strain and lack of sleep produces an effect which makes me look, on some days, like I have Celiac disease, with the sudden puffy face and body. The energy to get decked out in corset and knee high boots would leave me slumped by the bed for hours. Being powerless like this leaves me emotionally vulnerable, as I was able to control weight and appearance to find this ‘end stage’ of the disease takes that away too. “But Beth, you are alive when even the specialists and your palliative doctor expects you to be dead, isn’t that worth it?” I ask and tell myself.

“Maybe, but why can’t I have an end stage where I look ravishing too? I see that in movies all the time!” I demand. Those people in Bucket List or Never Let me Go, who with end stage cancer or mutiple organ removal can still head off on road trips, hikes, sky diving et al. How come they get energy while I get fatigue and puffy?

Thanks to my ‘good day’, I was able to make the second attempt for getting my hair cut and colored. This was important not just to the daily hair tangle struggle from no hair cut in close to a year but the need for Anime Hair. Anime Hair not only makes the world a brighter place (I went out in the sun for the first time in two months, followed by a howler of a storm), but life without anime hair means that a) I am unlikely to find a notebook dropped by the God of Death and use it, or discover that I am a goth-loli angel with a missing memory. Nor b) will I have chances to participate in a historical drama like Morbito: Guardian of the Spirit (with a cool, kick ass spear-woman) or even c) wander into experiences from freelance assassin (Darker than Black) to Goth Loli style detective (Gosick).

Still, off I went, looking haggard and puffy. One advantage of staying alive, plus the exercise to get blood to the scalp (keeping hair alive) is having hair of a decent length. Which is nice, as it gives the workers something to envy and comment on (except the ones who try to end up as my mother, and argue with Linda that I shouldn’t have ‘junk food’, refusing to bring the caffeine I take with a bottle of coke which speeds up my heart enough to stay conscious).
As you can see, by the end of the cut and colour, I was looking a lot less ‘ug’ and a had that devil-may-care grin back into my face. A good haircut really can make a difference.

The positive effects of the Anime Hair had me going home but doing two jigsaw puzzles, and also working through the night to write the two dozen cards for about twenty presents as well as over 25 postcards. I am sorry if your Xmas/Holiday present arrives in the next two weeks. I really had/have been trying very hard to get it done before Xmas/Holiday, but time moves faster than I. With that gust of energy, with help from Linda and Cheryl, I caught up and have, er, most...or at least MANY of the holiday presents sent. For me me, getting the gift, matching it, and writing the card all take determination, pure focus and will power along with energy. It might be a couple weeks late, but what is 20 odd days between friends, eh? Sadly, the styling energy disappeared, but, when it reappears, you know I’ll be back: I’m keeping on with keeping on.

The war on Intersex, transsexual, transgender and gay

Let me write plainly: we fall victim to a war of fear meant for others. In reading an article in Curve, a lesbian magazine on whether T is included or welcome in LGBT but also reading chats and articles about the proposed cookie bann from the girl scouts over trans girls, I was surprised to find Intersex children and intersex females to be given prominence in both of them.

I fear that already Intersex is the new catchword or idea, as it has shown up in general media from Terry Moore’s Echo to many, many other popular works in the last 18 months. And the problem is that very few people have the slightest idea of the dozen’s of intersex conditions much less what risks, markers or experiences each condition entail. Curve writer calls intersex individuals ‘chromosomal and anatomically diverse’ with a silent ‘challenged’ hanging above. I wish the article in Curve was done to bring education about the intersex individuals people already know, or barbaric ‘standard practices’ in North America, Australia and Europe on par with female genitalia mutilation known as ‘to circumcise.’ But as the article is about the T in LGBT, it is not.

T is itself not understood, even within gay and lesbian groups, even though it was T individuals who started the stonewall riots, and the idea of a collective identity and equality. T can include crossdressing for pleasure, dressing or presenting opposite to birth gender by choice or inclination, a medical condition known as transsexualism, trans which can mean almost as many things as individuals want it to mean, plus gender presentation as art/entertainment/persona such as drag kings and drag queens.

What does that have to do with intersex? Primarily what T or trans has to do with being gay: Only ignorance.

I remembered, while I looked at the pictures in Curve of a street protest walk of lesbians in South Africa, what it was like in the UK. In Victoria, however determined vanilla the inhabitants might want to be, discrimination comes often in subtle harassment, or the loss of certain equalities. In the UK, and we lived in a city which had at least a ‘safe(ish) area’ of two or three blocks, being out was the daily struggle against a population who believed that your right to exist was eliminated if you were out. That my existence, and even more so for out or suspected out gay men, was an actual threat. And you lived knowing that you may be attacked in your house, as several we knew were, may be attacked on the street in daylight, or killed, set on fire, hung, stabbed. I remember the week there was a stabbing of a gay man a day in London. That is just what it was: which is why we met in secret, we went out on valentines to a gay only establishment, etc. While transsexuals, and trans individuals, had a level of concentrated harassment from the entire community where they lived until they often chose to kill themselves. Three hours was the record for one person who came out as trans before being knifed. A local Cardiff trans individual had their home broken into and was attacked by a group. Standard. And as the FBI hate crimes, the book Pink Blood on Canadian Hate Crimes, the work by Arthur Dong on Serial Killers of Gays, and news reports universally indicate, the person harassing, attacking and killing trans individuals always thought they were gay.

Indeed, ‘fag’, ‘homo’, ‘queer’ are often carved into the bodies of killed Trans individuals, or reasons given for why they were killed. Sometimes that is a drag queen, who is tortured for three days being being set on fire, or by a man in NY who chasing after a T female they had been attracted and flirting with, shot them, and while the woman was on the ground, fired into them, reloaded the gun then unloaded it entirely into the woman. Why? Because, as the person said who shot, “I ain’t no fag.” Does the confusion that a woman isn't a gay man stop someone from death or serious injury? No.

As the murder of the transsexual Gwen Araujo in California showed, a jury will not convict of murder if there is sex or sexual attraction of men toward a female (for under the UK law, Gwen could have likely been legally female). The state prosecution (the people who represent the police and state attempting to prove that having four men strangle and smash Gwen in the head with a frying pan, shovel, tin cans until dead was murder) first could not or would not charge murder. Then, when charging murder, the prosecutor said that decisions to flirt, have overt sexual attention or acts between two consenting adults was ‘indefensible’ for Gwen because she was T. The defense said that the four males acted ‘as anyone would’, known as the ‘gay-panic/trans-panic defence’ (now illegal in California…for hate crimes against gay men).

It is clear that T women and trans individuals are being killed because others are worried people will think THEY (the person interacting with a T person) is gay. That is exactly what you will see in the interview of a man who murdered and multilated a trans female in Arthur Dong’s documentary Licenced to Kill. Plus the killer refers to the woman as 'it' (which is not an uncommon slur against T individuals). The Gwen Araujo case showed that a male consenting to Anal sex with a female was okay. But if the medical history or genitalia were suspected, even to hunting and killing that person LATER, as occurred in BC, was ‘involuntary’, 'natural', 'normal.' Yes, 'normal' to kill so someone doesn't think you are gay. Why? Because it is so univerally recognized that people hate gay men. Men don’t want to be thought of as gay so they killed someone who they thought made them look gay. They were ignorant, and someone died.

See, Gwen having sex with a guy is called ‘heterosexual’ as who you have sex with is orientation and whether you see yourself as male, female, androgynous or neuter is gender.

But people get that confused. And people who are the most aggressive to defend their orientation as ‘hetero’ or harass others for not being hetero are also the least likely to be aware or understand such distinctions. So, to them, they are harassing a ‘super-fag’, or ‘super-dyke’ or ‘unnatural being’

Except that it is becoming less acceptable to attack trans individuals in some parts of the US simply for existing. The amount of films where the villian is a cross-dresser, a transsexual or a trans has diminished from the heyday of the 90’s and early 21st century to a thankful rarity (when intersex individual as villian started rising).

So when people can’t ‘get’ trans kids, those who are ‘educated’ bring up intersex kids, pointing out that there are several tens of thousands of girls who have or have had ambiguous genitalia, or are intersex. Sadly, they don’t know enough about intersex conditions or individuals to say much beyond that. And thus individuals are starting to connect trans with intersex. So we have gay men, which is about orientation, and those who hate gay men killing T-individuals, which is about gender, now attacking and villanizing the intersex, which often is more of a medical experience.

In the kind of horrible irony, for the last few decades, gays and lesbians have often been trying to dump the T out of the human rights groups on the basis that ‘everyone hates T people.’ When that hate is more about the perceptions of expression of gay and lesbian identity than understanding and hating people for having a medical condition which requires hormones. Sort of like the two fathers in the same year who was afraid their two year old were not ‘man’ enough, and to avoid them being gay decided to teach them boxing, until they killed them.

South Africa, in the military with aparthied, gays who could not be ‘made straight’ were forced to become transsexual women. Meanwhile, in North America, Michael Bailey (a man who seems obsessed with finding who is and who is not gay in order to, in his own words, ‘fix that in the womb’) puts out a book saying that all transsexual women who live as women are actually gay men (The man who would be Queen, is the book name AND the name of the ‘academic presentation’ he made at over a dozen universities).

So, hate gay men? Attack t-women, so says academic Michael Bailey.

And so Governor Bush did, in Texas, eliminating marriages between transsexuals and non transsexuals. And when he became president, he used federal authority to refuse green cards for legal marriages if one of the individuals was transsexual in their medical history. And other states followed. And when those who advocate that people should be exactly as they were born, like ‘Adam and Eve’ because ‘God doesn’t make mistakes’, people start talking about intersex condition. And remember, what most people know of this is when House, M.D. in season 2 or 3 comes into the father and tells him that he isn’t having incest and rape with his daughter, but rather he’s gay……because his child is intersex.

As so officials, as the Curve article pointed out one case, are eliminating marriages, or rights of those found to be intersex. This is not because they know what intersex means or the various conditions, but simply on the basis that it, like this T and Trans stuff and the whole GAY thing is WRONG. And so, as I watch, and worry about the future of a group which have suffered at the hands of adults and children since a young age, or who only find out about it when something else, like infertility occurs. And there is, at present, no literature in the west to explain.

But Japan does. Japan is obsessed with children, and the same way girls’ day, on the 3rd of March (3/3), and what used to be boys’ day on the 5th of May (5/5 – now ‘children’s day), has included trans children day on the 4th of april, (4/4) and the manga title ‘Wandering Son (available in English now), and the anime of the same name (available at crunchyroll) about a girl who identifies as a boy and a boy who identifies as a girl, and how they progress, in school, in meeting each other, in limited acceptance. Into the Light, now in the 8th volume in english, is about raising an autistic child, so all could understand. And the series IS, for ‘InterSex’ are individual volumes in which a different baby is born with a different intersex condition. In the series readers can see the pressure on the parents for early operations, and the effect for those who have conditions which develop later in life. IS not in english, however I have several of the books in translation and will email the first book to you if you request it on my mpshiel address (mpshiel@hotmail.com) and then the next two after confirmation of getting the first book.

The series is sadly the only functionally plot driven but educational series or book on intersex conditions. I have previously reviewed the two books in the west: Middlesex and Annabel, and shown how not only did both authors NOT do any research but the conditions they present are not intersex, nor realistic of intersex experience.

In a war of ignorance, no one wins. And with each law that passes, whether it is intended towards gays, lesbians, bisexuals, trans, or intersex, any removal of rights is an injustice to us all. Worse when we shoot people for something that is literally encoded into their cells.

In finishing, I have been asked several times why those with intersex conditions don’t like ‘hermaphrodite’ as a term. Beyond that there really aren’t any hermaphrodites in the greek sense, it is the same way gay men don’t like the host of names for them, or how people don’t like to be referred to as ‘white man’s burden’ or ‘Our little brown brothers’, or many other common phrases in the US, Canada, UK, EU, Australia and New Zealand for immigrants from certain regions, or those who were the first nations.

Cell 211, a film beyond 'us' and 'them'

The film Cell 211is described as a film about a prison riot in a Spanish Prison. But this film, which has won over 25 awards, is so much more as we see how quickly the ‘they’ and ‘us’ divide can be crossed when experiences are shared. The basis is when a new guard, visiting the prison in street clothes the day before starting officially is injured in the ‘secure’ wing and left behind in Cell 211 by the guards giving him the tour. With no ID, and injured, he is assumed to be the ‘new guy’ and brought to the leader of the riot. He teeters between the uncertainty of being a new face but also bonding with the prisoner leader as together they face problems, endure tragedy and swap stories during the waiting and the down times. This film reminds me of Carandiru, a Brazilian film about a true story regarding conditions in a prison in Brazil. Carandiru is from the viewpoint of the one doctor of the prison holding over 7,000 prisoners who tries to being to treat prisoners with humanity but also deal with the rampant AIDS within the walls of the Carandiru prison until when a protest riot breaks out.

Both films shed a light on the complexity, problems and self delusions of prisons. North America, given up on reform, now has the highest per capita prison and felon population in the world. Prisoners, besides being cheap labor from call centers to chain gangs feature often in TV ‘reality’ shows from the point of view of the guards as we see prisoners kept in kennels, beaten, taunted. Many watch as entertainment real people being dehumanized: the 2.5% of the USA population.

Both films show outsiders who end up experiencing the prison from the inmate’s viewpoint and try, experiencing less and less possibilities for any control, to advocate in a system which is both a entrenched bureaucracy AND a dictatorship (of the Prison Warden). A system where individuals have no voice, and it is only AFTER a riot can one side be heard at all. Both films show how those who are supposed to be ‘in charge’ are often reacting instead of acting, and driven by emotion instead of reason. The underlying fear of loss of control increases the reaction of those in change. This escalates into the extreme lengths that the prison system and minister of justice or the interior go to in order to convince themselves that almost any action is right, if it is one that gives them the belief they are in control.

I read a quote that stayed with me: that the guard is as bound to the prisoner as the prisoner is to the guard, neither free. And it seems true, unless you believe that a person can watch or participate with violence, paranoia, abuse of power, and sadism but somehow put that down and walk away from it for an evening before picking it up to wear, along with the body armor the next morning.

Cell 211 and Carandiru both demonstrate the questions we are afraid to ask of ourselves socially and personally. The Russian Film The Way Back(also a 2010/2011 film on a real event and award winner - highly recommended), about prisoners during Stalin in the Sibera camps who escape, planning to walk thousands of miles to freedom, has an answer to the prison/prisoner problem in the title. The man who leads the escape must reunite with his wife, because only then can she know he forgives her. Sadly, we have moved from a system which allows for the possibility of forgiveness: it scoffs at those who would give it to those imprisoned and eliminates the possibility for those who are or have been imprisoned to return to society. When a person is unable to return to the Polis, or the group, they are always an outsider. In North America a person can serve the time, but you are always going to be a prisoner. Though released, n felon often cannot vote in their state, and is rarely allowed a passport. Even if a US felon got a passport, the UK often will deny entry (much like the US policy since 1987 to deny anyone with HIV entry, which is still listed as a reason for denial of entry after Bush removed the law enforcing it).

These films help us, as we empathize and understand the lives of those we have been told are ‘other’ to us, ask what the line should be for a humane detainment. What is the line that allows for detention of those who break the law without crossing over into acts both capricious and cruel, demeaning both those who endures and enacts them? At what point does a prison system stop thinking, treating or believing that those who guard and those detained are in different positions but still equal as human beings? The most common phrase heard about prisoners, in film or life is ‘they’re animals’, yet they are routinely treated in ways which would be illegal to treat animals.

In the film, Cell 211 is empty because the inhabitant, whose head is in so much pain, is medically examined only through the bars, as is routine, and told they have diarrhea. In fact, they have cancer, a tumor which is the size of a Kiwi is cut out of their head post death. The guard, in staring at the graffiti which chronicles the pain and loss of hope of the previous inmate begins to feel more for those he is in with than those watching from the cameras. This along with many acts, including being at the mercy of people who not only have complete control but abuse that power is what changes the viewpoints of the ‘outsiders’ in these films to become ‘insiders’, at least for a time. And in watching them, so we do as well. We can see and understand what it is like to risk your life and another five or ten years in jail just for the promise that your visit every two weeks not be taken away by a guard who has it out for you. Or that you spend weeks in ‘the hole’ where as one prisoner says, “You long for the guard to come and beat you so you have a voice to scream at.”

A friend who taught seventh grade was charged with a sex crime, and sent to jail as a pedophile for six months before the boy, whose mother found his gay magazines, and so to avoid coming out claimed sexual abuse from his gay teacher. He later recanted and though my teacher friend was freed and given his license to teach back, my friend never returned to teaching, nor advocated being out, or spoke up against slurs on others. He had something stolen from him, by this organism of jail, which never came back. And in a system which is meant to do that, to penalize, how could it be otherwise?

The more control is taken away, the more individuals are demonized, the more we become responsible to change a system which we have inherited. It is no accident that Jesus, 2000 years ago, quotes Isaiah, from 1,500 years earlier to say that he was come ‘to set the prisoner free’. Indeed, most Christians might be surprised to read that Jesus said they would be judged on how they treated the prisoner and the other vulnerable in society. If we become like a guard, who advocates human rights for some and not for others, we also are bound to prisoners in the myths we need to tell ourselves in order to continue seeing ourselves as ‘not like them’. Cell 211, The Way Back and Carandiru are all highest recommendation of the deep, pure desire for freedom and dignity. They are inspiring and tragic together; but also a good wake up slap on the face reminding us that survival requires adapting, as does self worth and dignity.

Shame

From falling down in training, to falling down in a fencing tournament then on to being in a wheelchair and the attempts to find a job (in a country with a 10 time unemployment rate for those in wheelchairs), I felt, through it all, shame.

Shame for every trip to the hospital. Shame for the $60+ for each ambulance trip and $80+ for each EMT call-out. Shame for every afternoon or evening ruined because I couldn’t go out, or worse had heart problems, or a micro stroke (TIA), or seizure cycle. There is the shame for the year and year where Linda was stuck in worse than Limbo, but rather a partner who, after a couple years, it became clear would not get better, and so our relationship, our holding each other up during down times was broken, by me and me alone. No extra odd jobs for me, no more hustling two or three minimum wage jobs to make the rent.

We don’t have euthanasia here nor does the ‘socialized medicine’ cover the costs of medicine, not even close. They cover part of the cost of an air conditioner if you have autonomic failure but not the cost of electricity, or anything else.

I can tell you that 1 in 35 women get MS, or 1 in 750 get MS and probably the stats are less for women who get cancer, and I can’t tell you what others feel but I feel shame. I am EXPECTED to feel shame. An RN comes into my home and walks out without putting on pain medication, indeed, she puts on two patches backward, soaking my top with Fentanyl, but leaves, job undone because as we reduce into the rudeness of undeclared hostility, she sees herself as doing a FAVOR for me, an act of kindess which I MUST act grateful for. That she gets $50,000 and is indeed part of a service industry, that she should be asking ‘how else can I assist?’ and have slogans like ‘we do it the way YOU want’ is ignored because I am a burden.

One of the first things I was told was that I am not craven enough to be disabled. I needed to publicly acknowledge my sub-human status in order to get the largess of care. So my GP calls my questions ‘time wasting’ and me ‘stupid’, ‘idiotic’ and worse. VIHA has in four years, only affirmed, twice, that they discriminate against me due to my disease. And the palliative unit Victoria was, until the late 80’s only used for those with cancer and openly questions if other dying people ‘should be allowed.’ (The answer is yes, but not those who die of old age, only the ‘right type’)

If I did not feel shame, I would be reminded of it at every turn. I am the problem: the doctor says it, the health agency says it, the caregiver groups say it. And if, at first accused, I am not a mental case but someone dying of physical cause, the attitudes do not improve, they get worse. Every appointment I miss, and I have missed and missed and missed appointments. I cannot have aid breathing at night because I missed the oxymeter test, then they were sick, then Xmas holiday, and missed the echocardiogram to determine how much my heart is enlarging as I die, and yet my GP is frustrated that I still live. I hear from Linda that her government boss is pressured to put down how my illness makes Linda a bad worker, the same complaint from 3 years ago, four years ago…

How can I not have blame, and shame for stealing years from Linda. For stealing her ability to smile, or laugh. Hurting her impeccable job performance causes me shame. How many events have I missed due to being ill? How much life do I have now to give? And when are they going to realize that without extra-ordinary circumstances, I don’t know how long it will take to die. But I will only be making less of the lives of those around me.

Maybe it is like when raped or abused, the victim is held up to a viewpoint that it must have happened due to them in SOME way. So there is shame here, as I MUST have been able to prevent it or changed it or made it different or better, or gotten the treatments which would have stabilized it, though I have asked EACH accessible neurologist in Victoria for application of IVIG, and two inaccessible, as well as every other specialist and person with hospital privilege.

I did this. I brought what we all fear and hate, Death, into your life, into your living room.

How can’t I be ashamed.

Voting ends soon for Canadian Blog Awards - spread the word

Hi everyone, it's Linda here. Beth has had a difficult few days - has been doing the basic necessities just to stay alive. She hopes to be back to blogging soon. In the meantime, I wanted to remind everyone that Beth wrote a post about the Canadian Blogging Awards a couple of weeks ago.

I see what Elizabeth goes through, and tries to put it aside to keep writing. I worry about her. But this is what she wants to do. She wants to make a difference. I see her dizzy, in pain, struggling, and it makes me feel so helpless. She is open, and honest and gets hurt because of it. She is the most caring person I know. She feels and cares more about other people, aches with them, than any other person I know. I see her so weak, so stubborn, she can't lift her head and she's still worried or upset about helping someone else while I am helpless to help her.

The voting goes until January 20th and you only need to vote once. So if you haven't already done so, it would be great if you could vote for Beth's blog in the following categories:

Health

LGBT

Please also spread the word on your blog if you think it is appropriate. She says she doesn't want to win but to know writing about people being equal matters. That's why she writes about the child with autism, and trans kids, caregivers, disability rights, intersex, lesbian lives, about what being ill and helpless feels like. The films and books she reviews are part of that life.

Thanks.

Linda

Sacrifice, love, trans kids and 'Canadian Values'

In the French Film Of God and Men, a true story set in 1995 Algiers, Trappist monk are told to leave, with militants on one side and French military. Only the the village, Islamic but having grown with them asks that they stay. To do so would likely mean death. “Remember, Love is Eternal Hope”

Others asked, ‘Why did they stay’ a film critic and clergy stated that the action taken was because these Trappist monks did not value THIS life, but looked toward the Salvation beyond.

Bullshit.

Courage is not made with a single act. Courage and love, come from the daily practice of living where one aspires to more than the self, and so when the question of selfless sacrifice occurs, it is an extension of the choices already made. Love and Courage are not monks staying because they want and lust some reward after this life, but an extension of the daily care with the community they bonded with over the years. We hope for it in all who are trusted and entrusted, from parents to police but seeing it, experiencing it is rarer.

CBC’s Passionate Eye shows both the kind of courage which changes a life, and the oppression which requires that kind of courage. Canada is not known internally for liberalism, not when our largest city, in the middle of the country is the most liberal and enshrines the most rights, Toronto. But in regards to transsexual individuals Ontario has an appalling history, where the Premier himself refused, even after a human rights and supreme court ruling against him to fund or let proceed medical operations promised, leaving men and women in legal and medical limbo for years.

For the purpose of the next paragraphs the terminology will be under medical usage, as it involves primarily medical not social aspects. Transsexuals are those who, using the worldwide standard, have a gender identity not compatible with the body. A medical standard of care, now extending down to children involves specialists in endocrinology, specialized psychologists, gender medical specialist and other fields as needed to ensure a match between brain and body. Trans, or transgender, is a term used in North America to refer to a spectrum which can include those who engage in gendered presentation or actions not in accord with perceived birth gender, either temporarily or lifelong. While that can include those who need medical intervention, it can also include those who do not, or those who do drag, either Drag King or Drag Queen, or confronting gender. The program’s narrator mixes the two terms, and also ignores AP and journalism standards by not referring to gender based on presentation by on perceived birth gender (a boy under medical care to ensure a proper male puberty should be referred to as 'he', the CBC doesn't follow this).

What comes through in the program (you can watch it here), some of it taken from other news agencies, is both the uplifting difference that individuals, specifically some medical professionals and parents (mothers) are making not just in the lives of their child, but in setting a standard of care. Sadly what also comes through, in the program creator and interviewers is the intolerance and ignorance in what is played half as ‘fear journalism’ (“This could happen to YOUR family!”) and partly as ‘new trends’ with a lax intolerance. Except of course the medical standard of care is over four generations old, older than the standard of care for epilepsy for example. And has the interviewer asking a boy if ‘they are really commited to being a boy?” “Really?” “Are you sure?” “100%???” Would the journalist ask these questions of anyone else, like a police officer, the Queen, Matt Damon? “Totally sure you think you are an actor?” “100 percent??” “Completely???” “Really, really sure??”

We see a parent/s, a caregiver, the mother, who day by day fought and bore the weight and costs of ensuring a diverse and yet socially gendered tween, puberty and adolescence for their child, or children (that ALL their children have the best lives possible). It is the love, the being there day after day, educating and enriching the lives of those they love which shows the courage of these parents. And the result are centered, confident children who are now teens, who have perhaps more experience with doctors and specialists than other kids that age, but that is about it.

Something like this is still only possible for those in a few cities, and with the right economic status but considering that medically it has been possible for the last 70 years, it has only been the last 15 years that Canada and many countries will even acknowledge that transgender/transsexual children exist, when New York and Toronto opened high schools for LGBTQI teens, the grouping which makes up to 60% of homeless teens and thus high school drop outs. Triangle school in Toronto is currently the only school room for LGBTQI students in Canada. Even though last year, a survey found that it is in elementary school when verbal and physical attacks begin, and by secondary school half are verbally or physically attacked daily, 67% feel unsafe. And while gay marriage is legal, having gay parents leads to verbal, physical and also, for 45% sexual ‘attention’ which is unwanted. This last year, Canada finally admitted that yes, Canada’s schools are homophobic, but only Toronto school board is trying, after the ‘send them to triangle’ for 15 years, to do anything about it. The change in the official curriculum to make schools less trans and homophobic in Toronto lead to a full page ad attacking transsexual, transgender and intersex students in the National just a few months ago. The ad is against the paper’s guidelines and they say they have no idea how it appeared, paid for by the Institute of Canadian Values. It appeared two days later in the Sun.

What the ad and the program have in common is that it is less about the individuals, those children, but the adults and what they find socially acceptable. It is a question of sacrifice: some, like mothers, sacrifice each day for their children, while others are willing to sacrifice children for themselves. This group of ‘Canadian Values’, by including intersex show not a lack of medical knowledge so much as belief that they can require a silencing and elimination of those who already exist, the babies, the children, the teens, the vulnerable in order to have a world that pleases them. Passionate eye, with the ‘it is just a phase’ wording like ‘when she first thought she was male’ invalidates doctors, specialist, parents and the individual. It is a shame that this is the ‘Canadian Values’, but it is not mine.

In Passionate Eye, most of the fathers have left. This is statistically standard. The mothers have had to change schools due to bullying, have confronted principals, teachers, day in and out to try provide the best childhood and thus adulthood for their child. All those interviewed, whether eight year old siblings, parents, friends all use the correct pronouns. Only the narrator ignores the AP rules and with dedicated consistency flashes up pictures (some times VERY early pictures) of the child in the program. The better adjusted the child, the longer we are told about a girl, with a girls name and shown film footage before we finally meet the boy they are supposed to be interviewing. So for Chris, in his mid to older teens, we don’t see him until three film footages of a 2-4 year old presumed girl, an interview with his aunt on his father leaving and why he shouldn’t have been a boy. Finally…we jump from a 2 year old grabbing a Xmas present to a 16 year old teen boy doing weight lifting in the basement.

This program of serious and in-depth journalism has this to describe the program: “What would you do if your young son was desperate to become a girl…..this shocking documentary..” (Shocking? To whom?). “into the world of children who believe they were born the wrong sex. Diagnosed with gender identity disorder, their childhoods include puberty blockers, hormone injections, cross-dressing and a struggle for social acceptance. How far are they willing to go to change their gender?”

The write up reflects a viewpoint in North America (one considered both lacking in medical foundation and harmful to the person from the UK and EU to the ruling of the Imam of Iran), that children are simply ‘confused’ and need therapy and negative reinforcement. They do not advocate gender specialist trained therapists but therapists to bring about gender stereotype conformity. What that conformity is depends on the comfort level of those adults in charge.

When born, there is your gender and your biology (the bits). It can take a few years for the gender of the child to make itself clear as often until the age of 6-7 a significant percent of children can engage in gendered activities other than biological gender. But then, they also will engage in activities of other species, and inanimate objects, like a fire engine. What researchers of brain biology have learned is that post birth, gender in most mammals, and in humans is fixed. Which is why the gender marker on the chromosome is considered the best determination of an individuals gender (this cannot be tested currently, but specialists in interviews and other tests have a 98-99% success rate). This is why the ISNA, and OII recommend, along with most specialist, that intersex babies not have surgery until gender is confirmed. One boy for example, changed from grade 2-4, which is when gender, meeting social expectation and interaction becomes most clear. Typically a boy may like dressing as a princess, but at 6 or 7 will stop, as social cues and group understand has them declare, "I am a boy!" So when someone viewed biologically as a girl is saying, "I am a boy!" at 7 and 8 and 9, that isn't a phase, it is the gender identity making itself known.

Patricia Highsmith for example spent until 19 telling everyone that "I am a male!" Coming from a well to do family, she was forced into a marriage, and tried both being with a female (as a male, in a suit and her trademark hat), then officially married under pressure, but did so to a gay male. Transgender teens, like the rest of the population may be gay or straight, as the gender marker has nothing to do with sexual orientation, thus trans doesn't automatically mean 'not a girl, but a gay boy' as parents or others often assume. Sadly, when Patricia Highsmith lived in the 1930's and 40's, transsexuals and transgender were barely known and never accepted. Pat wrote mysteries including Ripley's Game and The Talented Mr. Ripley, about a person who has to live life pretending to be someone and something they are not.

The show about young trans children is an important and ultimately uplifting topic: that in knowing there are already children with advocates in parents, doctors and principals more transgender and transsexual youth and teens will come out. And hopefully the next generation will be one with hope and a better life, borne from love. And that Canada, and our journalism might grow up. Already the age of coming out for transgender and transsexual individuals isn’t the secret kept until the 50’s but the 20’s. I hope for a future when it is the teen or as early as needed, in a society of acceptance of all diversity. As an nation of immigrants and ‘new starts’, we should lead the way in enshrining legal protection and medical support for transgender and transsexual teens. We don't, but we should.

Caregiving, which by definition is for one of the vulnerable members of society: a child, illness or disability, old age all have the capacity to be daily acts of courage. To set a standard, or as a mother said, she wanted above all to do no harm, and look in that mirror, whether in the silent success or the apologetic failure is an act of courage. It is this daily practice which allows us to become more, and to act not out of self interest but out of love. I am thankful for all those who act as caregivers and advocates, and whose silent sacrifice and courage make better lives. As Mother Theresa said regarding the point of exhausting herself on a dying infant, who would never thank her, never reciprocate, that the child would know that it was loved. It would die, but always knowing it was loved.

I think it is the knowledge that we are loved which allows us, in our vulnerable circumstances, to be brave ourselves and to endure. The 800th day of harrassment and bullying at school doesn’t make it any easier than the days before, nor knowing the violence always there, nor will the 801st day be any easier. In the same way, the fatigue, the pain of a chronic illness eats away at all joy just as much several years later as it did that first year. This is where the love, the caregiving, the knowledge of love without requirement, or condition can make the difference between being coping and moving on and simply waiting and hoping for death at your hand or anothers.

New Year Puzzle Fun, Echo the review and more!

Always have a back up plan (a second getaway driver doesn’t hurt either): that’s something disability and illness has taught me. I tried to go see Sherlock Holmes Monday but slept the day in order to compensate for loss of sleep due to pain. The kind of boring tedium which makes days disappear faster than you can say “opiate constipation!” haha.

I was to go to the Film today at 6:00 but getting ready took a wee bit longer than planned. But it worked out for the best, as I went in the evening, missing the earlier packed house, to an empty cinema. Linda and I laughed at Stephen Fry stealing every scene he was in, the new ‘urban disguise’ which I can only hope will catch on with children and survivalists alike and the homoerotic banter between Holmes and Watson. It is a good time, and getting out the house was fun, even if it was raining.

New Year’s Day Linda, Cheryl and I tried an Artifact Puzzle. Artifact Puzzle are a Seattle small business by two professors who make jigsaw puzzles out of a quarter inch of hard wood, cut with a laser. They aquire the rights to some facinating puzzles, including this bunny blossoms, which I long for, but as it costs $75, I will simply add it to my wish list. We started with 129 pieces, and after an hour of the three of us working hard, we finished The Garden of Death. Hey, I’m goth and macabre, envy it or get used to it! Workers like my stuff, or to be more accurate, they think their daughters would love my stuff (like when sorting clothes or the skull handkerchiefs my ice packs get wrapped in). It was fun but the unusual cutting of wood shapes along with thicker wood means that a few of the corners are not corners, and some of the puzzles are cut so there are no edge pieces at all (extra challenge score!). While now, the company specializes in designing ‘theme’ pieces, as the Bunny Blossoms has lots of different bunny pieces, while Stalking the Unicorn has myth and magic figures cut out (pictured). The tight fit of the wood in the puzzle means that sometimes trying a piece a few times to get the wood to shift in order to fit in. But once done, as you can see with Garden of Death above, the coated picture has a very high grade finish, good colour, and can be framed or broken up for another rainy day.

I finished the day starting to read Echo: The Complete Edition. It is by Terry Moore and the work he finished this year after Strangers in Paradise. This 600 page book has his black and white 3-D style as well as compelling and smart characters and plot. The planned and completed story arc avoids the repetition in SIP and other work of his and is a bargain at $25 with free shipping. There are very few graphic novels where I HAD to stay up in order to know how things ended, but this was one of them, along with ‘What is in the box?’ (a question you will have once you read Echo). The book has bisexual and lesbian themes, and includes colour covers and other bonuses. Sadly Terry Moore joins the growing group of North American artists who can’t draw a wheelchair to save his life, alas (or a wonderbra).

There is a sense of strange innocence in the book for those who are lesbian or bisexual, which is mildly amusing. I have noticed it in other graphic novels by guys, the few which aren’t all letchery, this alluding without ‘getting’ the whole attraction and how being horny or sexually attracted works between girls. But let’s face it, when most of the ‘western world’ and places like South Africa have legalized same sex marriage, along with two of the largest states in the USA, having girls kissing isn’t the ‘oh so debauched’ fantasy seen from the Matrix to Underworld. It is just….two people who are female expressing how they feel about each other in a public place, much like other married or non married couples.

As for the ‘New Year’, I am sure I will have resolutions, though right now I am working on a Top 10 list first. When surrounded by the ‘health professionals’ who seem to be chanting ‘Die, Die, Die!’ like I am the villaness in a ‘pro-wrestling’ under-card match who has just hit our heroine with a chair while she is dazed on the floor, the whole nature of reality seems skewed. Or that might be the pain. Or both. Simply by writing about the things I see and the conversations I have with VIHA, I have, according to Linda, become a ‘whistle-blower’; with all the fun that entails. Right now, I’d like to go outside when it is sunny, and watch some decent TV during the bad pain times. I had some bad pain times last week and they are not fun. You know, the ones where you slowly curl up, until your forehead touches the desk and people tell you that you are moaning. I had to ask people a couple times to pull me back and then prop the wheelchair so that I was sort of sitting upright or at least had my head up.

Isolated, but a community. Plus some blog awards and a naked New Year.

Happy New Year. I’m not sure who put the new year in the middle of winter and then told us to try and be happy about that, which is why I like the Japanese custom of timing the start of the year by when the Sakura Blossoms appear. Drinking under fresh cherry tree blossoms with friends OR join the polar club where people chop holes in the ice to go swimming on New Years? I know the type of New Year I would want.

Looking back it has been a hard year, but with the friends I have meet online, as well as individuals locally, I made it to the end of the year. It seems my doctor is mystified that I stay alive: he isn’t putting in a port for an IV for the increasing lapses into light coma, or dealing with any other symptoms but is irritated a bit that I am not dying the way people with cancer usually die. While I don’t HAVE cancer, it seems medically the BC Victoria units are set up for a) Old Age and b) Cancer. That’s it. Hopefully that can change.

This blog is in the Canadian Finals for two catagories, Health and LGBTQI (GLBT as they list it). You can go HERE and make one vote per section. While the dyslexia isn’t always countered and the topics are a bit less diverse, I have tried to keep the blog more than just a ‘oh woe!’ site. I hope that between film and book recommendations, topics are raised which are the ‘taboo’ of health, and other vulnerable minorities. I hope that going out, capturing the experience in word and pictures will continue. So if you choose the Health or GLBT section and vote, I would appreciate it. Voting closes Jan 20th. Oh, and Steampunk Scholar made the finals under culture, go steampunk!

I was notified that Screw Bronze was nominated for a Health Activist Award under category, Best Kept Secret. There isn’t any voting, but if you want to be a jury member for various health blogs, apply HERE. Thank you whomever nominated it.

Okay, all that boring out of the way. One of the gifts was a book of Sex for those with disabilities (which I will review). Several posts, already written but waiting until after new year. And also, more queer blogging. As Librarian on Wheels writes both the disability and queer experience can be a lonely one. But it is one where the people who blog and comment can make a difference by sharing the personal tales, thoughts and experiences.
Looking ahead, some days, just getting to the end of the week seems a huge challenge, but I have booked for Sakura-con. That’s a goal. While my edema goes on, my torso, face, and rest of the body are quite thin with lowered body fat. A little fuzzy tail and ears would honestly help out. I simply burn too hot and eat too little.

But here is to having a nice evening, a glass of water, wine or champagne. I just wish I had fireworks as like the colours and they go boom.

Teacher stuffs autistic child in duffel bag, repeatedly.

This is one of those, YOU CAN HELP, quick posts.

Yes, in Mercer County, KY, Chris Baker, a nine year old with autism has his teacher stuffing him into a duffel bag, sealing the top and then putting it in the hall for unknown periods of time. The staff claims it is ‘therapy’ but can’t say what the ‘therapy’ is or what the outcome is supposed to be (kind of like how putting weaker students heads into toilets is ‘therapy?’). Worse, it had been going on for some time, and the parent had never been notified. She only found out when she found a bag in the hall with her son’s voice coming out of it. The school won’t commit to ending the practice. What is worse, the ‘aide’ to assist Chris with his Autism is the one who seems primarily responsible. More at the Guardian online here.

“…she was told that Christopher had had a ball and, when instructed to put it down, had thrown it across the room.

"He did not hurt anyone or himself. I asked, 'Why did you put him in a bag?' She told me it was for therapy. The special education director told me that it had been used for other children."

Besides the whole WTF of the school defending this, the way the putting a nine year old child in the hallway inside a tied bag is somehow good is because it is ‘therapeutic for autism’. The old bait and switch of ‘we know what is best for (insert condition)’ when horrific practices are found. So, other kids aren’t put in the bag, just him and other kids with autism? How lucky for them! (sarcasm alert) While technically not tied into a knot, when the mother demanded her child be removed, the teacher could not open the bag without a considerable delay and loosening of it.

The petition is HERE. And other cases of abuse to children with autism are noted HERE.

Click and hopefully change the world for the better.

UPDATE: due to an update and more information, the bag used was from Abilitations called BagOBalls. It is supposed to have 500-1000 balls to create a safe and open stimming environment. That's probably why is isn't called: "BagOChild". The whole kit costs $299 and requires training. What they used was the bag, which costs $49, the person had no training and without the balls the bag is....just another drawstring bag. A strong bag, which happens to be large enough to put a child into. They acted against the maker's instructions, closed and tighten the drawstring on the child, then left them isolated without even medical safeguard supervision.

A time for dancing.

We all face our pain in different ways. Escape it, block it, avoid it, group meetings, late nights, routines, blame ourselves, blame others, pretend the wound never happened.

When you die, they dehumanize you. It is a coping response: they slot you and box you and you are the patient, not The Caregiver, or The Spouse, The Support, The Care Provider, The Family, The one in grief, the one in pain. And they are.

But it is a person dying, and they have a name, and they have hobbies, jobs, jokes, favorite colors and flavors. They are not looking for a 20 foot room to die in. My grandmother kept using her walker every day to explore the hospital. She had flown at 65 on a mail carrier to the Arctic to stay with an Inuit Tribe for two weeks. She talked about her travels in China, and Russia, and every place that she had taught in her school and read about in National Geographic. She suffocated because a worker paid $19.68 an hour didn’t hook her nosepiece to the oxygen.

No one looks for a 20 foot white room to die in. I have a name, I have a history, I have desires and plans, just like you. Elizabeth McClung, who had a wet dream last night of doing a very complicated sexual position. I woke to a body paralyzed, thinking, “Wow, I didn’t know Linda was so flexible.” It is the little, odd, usual, lewd and tender things which combine to make us into a person, and to remain so until the last beat of the heart.

Today I danced, perhaps only the top half, but I dance. There is time in life to dance, even during the dying. The intertwining is in all of us, to some degree or another. So dance.

Longing: By the Waters of Babylon

By the Waters of Babylon; there we weep and sat down

Psalm 137, the psalm of exile and longing seems appropriate this time of year. As appealing as Ayn Rand seems we do not construct our life alone. Sometimes the decisions are made by others and sometimes life just happens to us. And while this season effuses a home and family, for many of us, those are the lights of families, of towns, twinkling attractively in idea of inclusion, of home. My parents, Murray and Patricia McClung moved three times before I was 5, and 19 times from 7 to 18, so there is ‘coming home’ for me.

My parents, when I first became ill, chose to withdraw from me, and any minimal assistance until three years ago, they simply stopped being my parents and disappeared. I have not seen them since then.

My brother Peter R. McClung and his wife Susan do not approve of my ‘lifestyle’ and will not meet me, or in the last years communicate. This means I have seen my teen nephew once. I don’t know if he gets my communications.

Where I grew up, there were ‘outsiders’ and ‘chosen ones’ and since ‘outsiders’ were dead already, not having the True God in them, communication, interaction was all forbidden. When I came out, I lost every friend I had: I am already dead to all those I knew for 20 years.

So, there is no ‘coming home’ for me.

This time of year, as people disappear into what I hear from them over and over again is ‘important’ reminds me that I am one of the many who is outside, an Exile whose homeland is gone. Much like the story in the Pslam, where those forced marched to Babylon, the remnants of the kingdom of Judah, homeland destroyed, taken to another land, given new names, and then told, ‘sing us those songs of your homeland. Sing us those songs of your happiness and joy in your land.’

People can choose to come together and people can choose to be apart. I can forgive, I can send letters or emails, but without the other choosing to connect it becomes just another dead letter box.

If you don’t know what I am talking about, or are too busy with family and parties and engagements to understand what I mean, that’s great. But for the rest of us, here is to those aspects of longing, even for a place or live that isn’t possible. I ask myself almost daily, “Why do I have to die?” Here is for the dreams unfulfilled, and the hope that is crushed with them.

I think all of us, particularly those that wear the masks, have a schism between what we long for, what would give us peace, the aspects of the self and the life lived which are a life in mourning. Sometimes it seem I have been exiled from a land I was never a part of, may have never visited, and as much as I love travel and seeing and learning new things, there are times where I dearly ache for ‘home’, though there isn’t one. And no Peter, I don’t believe that money solves everything, though being ill without much, or in the inevitable debt (as Lene writes about) tends to highlight the social separation.

Today, we remember, and yearn.